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Home » My Quest To Cure Prion Disease — Before It’s Too Late: Sonia Vallabh (Transcript)

My Quest To Cure Prion Disease — Before It’s Too Late: Sonia Vallabh (Transcript)

Here is the full transcript of Biomedical researcher Sonia Vallabh’s talk titled “My Quest To Cure Prion Disease — Before It’s Too Late” at TED 2024 conference.

Listen to the audio version here:

TRANSCRIPT:

I’m here because of a letter I got 13 years ago. A letter from the future. This is it. It’s a predictive genetic test report, and it’s at the heart of this sort of red pill-blue pill moment when my life forked in two.

Two Moments from My Life

Before I tell you about that, I want to show you two moments from my life back then. This is moment number one. It’s August 2009, and I’m marrying this guy, Eric, love of my life. He gets up there to give his speech and he’s holding my diary from when I was 13, and he starts reading from it, and the guests are looking at me like, “Did she know he was going to do this?” Guys, if you’re watching, I knew. OK, this is me and my mom. You can see how she’s laughing but she’s kind of scandalized. She’s 51 years old and on this day, she is glowing.

I wish I could stay here with you, but now I have to take you to moment number two. It’s only six months later, and suddenly there’s this tear in the universe, and my mom is being sucked through it. No one can tell us what’s wrong, but something is really, really wrong, and it is snowballing. And it is everything. She’s confused about who she is, where she is. She’s scared.

She’s hallucinating. She is too weak to walk. This is happening on a timescale of weeks. I’m looking into her eyes, and they are these black holes, and I am begging her to come back, but it’s like I’m shouting into the void. That summer, she goes into the hospital, and she doesn’t come out. By the time she dies, it has been months since she was really there. We don’t get a present tense goodbye. Dementia has robbed us of that, and we still have no idea what happened.

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